SAN ANTONIO—Athletic, active teenage girls who excel in school are not who you would expect to fall victim to a debilitating and difficult to diagnose illness. But it is happening to a group of mostly girls on the north side of San Antonio.
Most of them live along the I-10 West corridor between Camp Bullis all the way up to Boerne.
"She never had headaches. She was never sick or went to the doctor," said a local mother, who prefers not to be identified because of the stigma attached to her daughter’s rare disease. "In April 2009, she started having severe migraines," said the woman who we’ll call Cindy. She is the mother of a 15-year-old girl with an autoimmune syndrome.
"She was having a seizure-like activity, but it wasn’t epileptic," said Cindy.
Then came the chronic fatigue, nausea, dizzy spells causing blackouts, and stomach problems. She says the illness is so unusual, some doctors accused her daughter of faking it.
"We had one...We’d get, ‘This is all in your daughters head, nothing wrong with her. Get her a good psychiatrist,’" Cindy said.
She took her daughter to one doctor after another with no definitive diagnosis.
Then she discovered her daughter wasn’t the only one experiencing the illnesses.
Several of her daughter’s childhood friends were also coming down with similar unexplained symptoms.
"Some of them to the point of not being able to do traditional school - where they were needed some accommodations for their fatigue," said Cindy.
"Primarily, these are teens between 12 to 18 or 19 years of age," said Dr. Mahendra Patel, a pediatric hematology oncologist in San Antonio.
Over the past 15 years, Patel said he has seen dozens of cases involving teenagers and autoimmune disorders.
"Autoimmune disorders, per say, are rare disorders in the pediatric population," he explained.
Autoimmune disorders are chronic illnesses that occur when the body’s immune system attacks its own organs.
"The number of cases I am diagnosing is a lot more, and incidence rates are increasing," said Patel.
He said the most common autoimmune disorder is rheumatoid arthritis. But there are others, like chronic fatigue syndrome and postural tachycardia syndrome, or POTS. This condition affects the heart rate. There are also conditions like Dysautonomia, Epstein Barr virus, Lupus and Wegener’s granulomatosis, which is an inflammation of the blood vessels that affects the nose, lungs, kidneys and other organs.
Patel said only recently have doctors begun to understand these illnesses and why they may develop in young people. They are also learning how to treat them.
"Now, with the constellation of symptoms [they can be put into] a syndrome name, and a fairly good test to measure it, the medical team is now accepting the diagnosis," said Patel.
He said medical experts now know the illnesses can be traced back to an infection the teens may have had, like mono, which is a virus. But they can also be bacterial, fungal or parasitic. That’s why Patel said the best way to prevent these infections is to avoid sharing beverages or hand towels, to thoroughly clean sporting equipment, and to always wash your hands or use hand sanitizer.
While Cindy still can’t explain why her daughter developed an autoimmune disorder, coping with this has been a journey. The strain has been lessened, thanks to a support group she has started with others who share their experience.
"Those moms or parents are in the same place I am," she said. "I’m just looking for those pieces of the puzzle...that that picture will become more into focus and give an authentic accurate perceptive of what we are dealing with."
Cindy is at the Mayo Clinic this week having more tests run on her daughter. She is hoping specialists there can reach a more specific diagnosis on what her daughter has, so they can treat it more effectively.